GlobalSkin Newsletter

December 2024

Message from the Board President

Dear GlobalSkin Members & Stakeholders,

I can’t believe that 2024 is already coming to a close and I am truly astonished by how much we have accomplished together this year.

GlobalSkin has continued to grow with our membership closing out the year with 293 members, in 71 countries, representing 59 disease areas. Our vision of creating a world where people with dermatological conditions are healthy and fulfilled, has continued to advance through our strategic objectives.

Read the Full Letter

Year in Review 2024

We've released the GlobalSkin's 2024 Year in Review report — an in-depth overview of our organization's notable achievements, membership growth, advocacy work within our thriving communities, and upcoming initiatives for 2025.

Alongside the report, GlobalSkin CEO Jennifer Austin has shared her reflections on a successful 2024 through a brief video.

Read the Year in Review Report Here

Membership Updates

GlobalSkin Membership Growth

As an international alliance, we are committed to the principles of diversity, equity, inclusion and belonging. We are striving to ensure patient organizations from all parts of the world are seen, heard and valued.

Since the beginning of this year GlobalSkin has grown 13% by welcoming 36  new patient organizations to our organization, bringing our membership to 293 Member organizations, representing 59 disease areas and 71 countries. 

Elevating the Dermatology Patient Community

GlobalSkin Conference 2025

Seats are filling up fast for the GlobalSkin Conference 2025, themed "Champion", taking place April 24–27, 2025, in Prague, Czech Republic. Packed with tailored learning opportunities and expert-led insights, the conference will start with pre-conference events for the Atopic Eczema and RareDERM Communities. GlobalSkin Members who have not registered to date are encouraged to do so soon to secure their seat at the conference.

Last week, we hosted an online coffee chat for GlobalSkin members interested in speaking at the event. In this interactive session, we offered insights into the submission process, tips for crafting impactful presentation proposals, and answers to attendees' questions. We look forward to fantastic presentations from our members on Mental Health, Advocacy, and Successful Collaborations.

Registered delegates are encouraged to check their registration confirmation email from CVENT for links to book hotel rooms, access the visa letter, and apply for travel bursaries generously funded by our sponsors and to apply to be speakers.

Learn more about our conference here

Member Impact Fund

The Member Impact Fund 2025 is now accepting applications from Full and Associate Members! The application intake period will close December 13 at 5:00 PM Eastern Time. GlobalSkin will now review applications based on set criteria so everyone can submit a strong application. For more information check you inbox.

With one more day to submit, we can’t wait to see your project!

2024 Recap

The Member Impact Fund 2024 funded 42 unique projects, representing 28 countries and 17 disease areas! Twenty-three of the 42 projects were awarded additional funding to complete Skin Cancer Awareness projects. All of the projects are a testament to our Members’ dedication and commitment as they work tirelessly to improve lives of those living with dermatological conditions. We are proud to support such great projects.

To learn more, click here to read a summary of the 2024 Impact Fund projects.

Community & Networks Updates

Rare Disease Day Fund

February 28 is Rare Disease Day; an opportunity for our Members to raise awareness for rare skin diseases. We are excited to once again offer the Rare Disease Day Fund to our Full and Associate Members. These micro-grants aim to support Member Rare Disease campaign and awareness efforts.

The Rare Disease Day Fund is now open, and we will accept applications until December 18, 2024, at 11:59 PM Eastern Time. A limited number of grants will be awarded, so submit your applications early.

For more information and to apply, please click here.

Awareness Day Tools & Resources

Leading up to February 29, we encourage Patient Organization Members to participate in this year's My Skin is Rare campaign to raise awareness for rare dermatological diseases on social media. Contribute to the conversation online by using our campaign tools which can be found here.

Tell us your story

We would like to feature stories and testimonials about what it's like to live with a rare dermatological disease. We encourage Members and their patients to share their stories to be showcased on our website and social media channels. You are invited to write about your experience and add photos here.

GlobalSkin continues to have an active presence in European policy circles attending recent events of the European Medicines Agency (EMA) in November where a joint meeting was held of the Patients' and Consumers' Working Party (PCWP) and Healthcare Professionals' Working Party (HCPWP).

We also attended the European Health Summit, in Brussels in early December. These events brought together key stakeholders from across the healthcare sector to discuss pressing health challenges and shape future policies in Europe. They are excellent platforms for GlobalSkin to foster collaboration and amplify the voice of dermatology patients at the European level. 

2024 World Atopic Eczema Day Report

The 2024 World Atopic Eczema Day Report is now available for download. This report highlights the global impact of our #AtopicEczemaUnfiltered awareness campaign, which brought together patient groups, caregivers, healthcare professionals, and industry leaders to raise awareness on the condition. It also features inspiring stories from patient organizations that utilized the World Atopic Eczema Day Fund to drive impactful activities for the awareness day.

Download the Report Here

GlobalSkin African Regional Network

On November 12, the newly formed GlobalSkin African Regional Network convened to review their initiatives and plan future actions. The meeting brought together 36 participants representing diverse disease areas and regions across Africa. Members unanimously agreed to advance their 2025 Working Plan, which supports GlobalSkin’s core mission to elevate, champion, unite, and build.

Since the inaugural meeting in Kenya, this marks the first year of the African Regional Network, and we are excited to see the progress they will make in the coming year. This plan is designed to empower patient-led dermatology organizations across the African region, and we eagerly anticipate the impactful outcomes this dedicated group will achieve! More to come in 2025 on opportunities for other regions to form Regional Networks!

Championing the Patient's Voice

WHA Resolution on Addressing the Burden
of Skin Diseases

On December 5, 2024, GlobalSkin, the ILDS, Health Diplomacy Alliance and other key partners co-hosted a public webinar "Skin Diseases as a Global Public Health Priority", which focused on education and awareness around our campaign for a proposed All-Skin Diseases Resolution at the 2025 World Health Assembly.

This webinar garnered great interest with 440 registrations from people in 82 countries including representatives from member states, healthcare professionals, patient advocates, and policy experts.

Attendees joined to discuss the profound impact of skin diseases on global public health with presentations from Public Health representative Côte d’Ivoire, CEO of GlobalSkin, Board Director from the ILDS and the lived experience perspective from DEBRA South Africa. We explored how to support this initiative that calls for a global action plan to effectively tackle the burden of all skin diseases, currently being exacerbated by social and economic factors, emerging infectious diseases, climate change and the impact on mental health.

Watch the recording of the full webinar here.

Member Coffee Chat

GlobalSkin will also host a coffee chat for our Members on the topic of the All-Skin Diseases Resolution on January 22, 2025, at 10:00 EST | 16:00 CET. We will update Members on the World Health Assembly resolution process and discuss relevant calls to action our Members can take to support the resolution in their countries. Register here.

GlobalSkin’s Presence at Recent Events

GlobalSkin at ISAD 2024

GlobalSkin's Atopic Eczema Community had the opportunity to attend 14th Georg Rajka Symposium held in Doha. We are grateful our Member delegation that attended we thank them for their invaluable contributions throughout the conference.

Our participation included being a chair in the Patient Care Session, sharing insights about our patient communities at an exhibition booth, and co-hosting a Skin Matters Reception with the Global Atopic Dermatitis Atlas.

GlobalSkin was also part of the ISAD-WHO meeting on atopic dermatitis, held at Hamad Bin Khalifa University in Doha on October 23, the day before the ISAD congress. The meeting covered a broad range of topics including the recently launched Open WHO course on atopic dermatitis for primary care settings in Sub-Saharan Africa; the Global Atopic Dermatitis Atlas; and low-cost emollients, which ISAD is putting forward to be included on the WHO Essential Medicines List. Our CEO Jennifer Austin co-chaired one of the sessions bringing the patient perspective into the discussions.

GlobalSkin at PEOF Virtual Session

In November, GlobalSkin CEO Jennifer Austin spoke in a Patient Engagement Open Forum (PEOF) webinar hosted by PFMD entitled, “Catalyzing Change: Using the WHO Resolution on Social Participation in health to achieve real patient-driven impact”. This was organized via the Patient Movement Catalyst's stewardship council of which Jennifer is a member. The WHO resolution on Social Participation in health created the political pathway towards formally and officially integrating the voices of patients, lived experience communities, and civil society into health system decision-making.

Watch the video here

GlobalSkin at PeDRA Conference

GlobalSkin was pleased to be a participant at the PeDRA Conference held in Phoenix, Arizona in October. As a member of the PeDRA Patient Advisory Committee, we participated in the breakout sessions, attended the excellent pre-session by Global Parents for Eczema Research, and networked with fellow leaders, researchers, and HCPs.

The opportunities to learn about current research in dermatology combined with meeting and connecting with the community were invaluable.

Uniting to Change Perceptions

PRIDD Measure

Following the launch of the PRIDD measure at the EADV Congress in September there has been interest in using the measure for research purposes. Research depts and organizations from around the world including Germany, Netherlands, Scotland, Australia, Singapore are using or considering PRIDD in their project. This includes disease areas Ichthyosis, blistering diseases and atopic eczema.

If your organization is interested in using PRIDD in a research project it is still available while we continue developing the licensing process, please reach out to Allison FitzGerald. You and your patients can also download the app for personal use at pridd.org.

The final PRIDD measure and GRIDD study data abstracts and posters had their first appearances this fall at the following events:

ISOQOL, (International Society for Quality of Life Research) Neuza da Silva Berger from Hamburg University presented the first high level insights from the GRIDD Study data during a workshop
ICHOM (International Consortium for Harmonized Outcome Measures) the PRIDD patient led development process poster and final measure poster were part of a poster tour.
Allison FitzGerald also presented on what a patient led process looks like to a full audience and at ISPOR (International society o for Pharmoeconomics and Outcomes Research) where the poster on GRIDD Study data insights was awarded a top 5% of submissions.

We look forward to sharing more information and explanation of the final PRIDD measure and the data insights from the GRIDD study at our conference in Prague.

Events and Awareness Days

GlobalSkin Events

GlobalSkin Member Coffee Chat on Advocacy - January 22, 2025
GlobalSkin Conference 2025 (Prague) - April 24 - 27, 2025

Other Events

4th VIPOC Vitiligo Conference (Cairo) - December 13 - 15, 2024
2025 International Scientific Conference on Albinism (Online) -
January 21-24, 2025
WHO Executive Board Meeting (Geneva) - February 3-11, 2025
4^th Global NCD Alliance Forum (Kigali) - February 13-15, 2025
2025 AAD Annual Meeting (Orlando) - March 7-11, 2025
2^nd WHO Global Meeting on Skin NTDs (Online/Geneva) - March 24-26, 2025

Awareness Days

Universal Health Coverage Day - December 12, 2024
World Neglected Tropical Diseases Day - January 30, 2025
World Cancer Day  - February 4, 2025
Rare Disease Day - February 28, 2025

Check our website regularly for event listings. Does your organization have an “awareness day campaign”? Please share details with us, as we would love to promote your work and share with our network.

Thank you to our Core Mission partners whose collaboration and generosity is essential to our organization’s success:

GlobalSkin.org

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The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is a unique global alliance, committed to improving the lives of skin patients worldwide. We nurture relationships with members, partners and all involved in healthcare ─ building dialogue with decision-makers around the globe to promote patient-centered healthcare. GlobalSkin works to empower its 293 patient association members ─ located in 71 countries representing 59 disease areas ─ to reach more patients, and provide them with greater support, education, and advocacy.